Saturday, July 13, 2013

Feeling Confident

It has been exactly three months since Anna Claire's last PFAPA episode....Praise God! April 13th was the last time we used steroids to treat my daughter's raging fever. I feel like a "new" person, less stressed, more rested, and less worried about my little girl. I still have my guard up. Everyday, in the back of my mind think is today the day when AC will start running a fever? For three months, AC has been a happier and healthier girl. She has gained weight and her coloring is now rosy, not pale. She enjoys playing and having fun! Over the past three months, she did have one evening of vomiting, two mouth ulcers and many days of leg pain, but the bottom line is she has not have fever! I do not feel like we are out of the woods yet, but three months without fever is something to celebrate. So here are a few of my thoughts .... 1. At 18 months, AC fractured her front tooth. The dentist bonded the tooth, we went for check ups every two months. After 1.5 years, on March 28th the dentist removed the fractured tooth due to the tooth loosening and due to a sign of slight infection according to an x-ray. Is there any correlation with her tooth being removed and her episodes not returning? 2. AC was on immune boosting supplements, Raindrop Therapy (essential oils), Calmari oil, and a Calicum supplement for six weeks. The functional medicine doctor we visited at the beginning of May. He believed she had a viral infection in her throat/neck area. He recommended the supplements and viewed the use of steroids as masking a symptom if a bigger problem. Did the supplement cure her or keep PFAPA at bay? I am not a doctor and do not have any training, but I am a PFAPA mom. I have lived with the anxiety, the fear, and the pain seeing my baby suffer for two years with high fevers, mouth ulcers, sore throats, vomiting, and joint pain. I want to share our journey in getting out of this terrible cycle of PFAPA. So far, it has been three months of FREEDOM! My prayer is each of our PFAPA children would not have to suffer and our families can play together, enjoy each other, and live a full life without the burden of PFAPA. I will continue to write updates on Anna Claire.

6 comments:

  1. Thank you for sharing your experience with us. I'm so glad your daughter is no longer suffering! I hope your family maintains a happy 'free-from-pfapa' life!
    My daughter will be 4 in November; she's been suffering with PFAPA since birth and is currently on prednisolone which I am not happy about but can see no alternative as fevers get dangerously high at 105+. Please do keep us posted.. so nice to hear some good news can come out from all of this :)
    Love from a fellow PFAPA Mum x

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  2. Thank you for this blog! My daughter is 2 years old and is suffering from what we think is PFAPA. I saw this last post was in July and I'm wondering if you have an update? Is she still fever free? If not, how long before the next episode came?

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  3. Hello! My daughter, who will be 3 next month, has suffered since 7 months old, only being diagnosed a little less than a year ago. I'm wondering how your little one was doing? My daughter went 5 months no fever, only to have 2 episodes in the last 2 months.

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  4. Hi! I'm another PFAPA parent here, and also have blogged about the experience: http://overinvolvedmom.com/2014/12/05/is-your-kid-sick-again-when-a-virus-strikes-12-times-a-year/
    Things are looking up for my son now. His fevers pretty much have stopped since July, when we started giving him 600 iu of Vitamin D (included in most standard gummie multivitamins) each day.

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  5. HI there! I am considering taking my son to a functional dr. as well. Could you give us an update onyour daughter's PFAPA? Did the functional approach work? Thanks.

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  6. HI there! I am considering taking my son to a functional dr. as well. Could you give us an update onyour daughter's PFAPA? Did the functional approach work? Thanks.

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